@randersonccc
Just so you know... I was told that I shouldn't taper any lower than 3 mg when I had a low cortisol level. When I asked how long I should stay on 3 mg -- an endocrinologist said "as long as it takes" for my cortisol level to improve. I was warned that my cortisol level may never improve. That was because I had been on Prednisone for 12 years. The chances of getting off Prednisone decreases with duration and cumulative dose of prednisone.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11451960/.
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It took 6 months for my cortisol level to improve. It was a novel approach because nobody ever told me not to taper off Prednisone before. I was more surprised by what my endocrinologist said after my cortisol level improved. She said 3 mg of Prednisone was a very low dose of Prednisone and no taper was needed so long as my cortisol remained at an "adequate level." I was told to discontinue Prednisone if PMR was controlled AND my cortisol level was adequate. Two things needed to happen before I could taper off Prednisone.
Actemra was keeping PMR in check so I discontinued Prednisone. I did a "countdown taper" 3 - 2 - 1 - zero in less than 2 weeks. It was great to be off Prednisone for a few weeks the first time I tapered off. Unfortunately, one of my other autoimmune conditions flared up. I was back on 60 mg of Prednisone again because of uveitis. My endocrinologist said I should expect the unexpected when I tapered off Prednisone but nobody expected a flare of uveitis!
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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My opthalmologist said Actemra wasn't "optimal" treatment for uveitis. Humira was "optimal" for uveitis so it was tried. I had a lot of past experience treating uveitis with high dose Prednisone. My treatment plan was to taper off Prednisone within a month or two. Humira was supposed to prevent uveitis from flaring up again.
What Humira didn't prevent was PMR flare. I was stuck on 15 mg of Prednisone again because my PMR symptoms returned. My rheumatologist said I needed to give Humira time to work. The time frame was 3 months to see if Humira would work for PMR.
Humira didn't work for PMR but I gave it 3 months. That was when my rheumatologist told me to pick the biologic that worked the best for me. It didn't take me long to pick Actemra. I went from 15 mg to zero again in slightly more than a month the second time I tapered off.
My rheumatologist said it would be impossible to adequately treat all my conditions. However, I have now been off Prednisone for more than 5 years without a flare of anything. The only time I had a flare since that time was when I wasn't on Actemra.
Good luck getting past your 2 mg barrier. My barrier happened at 3 mg. I just wanted to say expect the unexpected because nobody knows what might happen at this stage. Try to stay optimistic. I don't think any single tapering plan works perfectly for everyone. I don't recommend doing what I did because it might not work for you. I managed to dodge the worst case scenario of having an adrenal crisis but I had to stay on 3 mg for a long time.
@dadcue thank you! This helps. I’ll keep up w the Actemra and worry too much about my taper as I’m at 2 mg thank you again. You all have been very helpful and supportive. ☺️🙏